Risk & Resistance with Aziza Ahmed

My guest today is Aziza Ahmed, a Professor of Law and N. Neal Pike Scholar at the Boston University School of Law. She is also a Co-Director of BU Law’s Program on Reproductive Justice. She joins me and UVA Law 3L, Nia Saunders, to discuss her new book Risk and Resistance: How Feminists Transformed the Law and Science of AIDS, forthcoming from Cambridge University Press in 2025. 

Prior to teaching, Professor Ahmed was a research associate at the Harvard School of Public Health Program on International Health and Human Rights. She came to that position after a Women’s Law and Public Policy Fellowship where she worked with the International Community of Women Living with HIV/AIDS. Professor Ahmed was a member of the Technical Advisory Group on HIV and the Law convened by the United Nations Development Programme (UNDP) and has been an expert for many institutions, including the American Bar Association and UNDP.

Reading List

• • Ahmed Bio
  • Linda C. McClain & Aziza Ahmed, The Routledge Companion to Gender and Covid-19 (2024)
  • SCHOLARLY COMMONS
• Nicole Huberfeld, Linda C. McClain & Aziza Ahmed,Rethinking Foundations and Analyzing New Conflicts: Teaching Law after Dobbs 17 Saint Louis University Journal of Health Law & Policy (2024). SCHOLARLY COMMONS
• Aziza Ahmed, Dabney P. Evans, Jason Jackson, Benjamin Mason Meier & Cecília Tomori, Dobbs v. Jackson Women’s Health: Undermining Public Health, Facilitating Reproductive Coercion 51 Journal of Law, Medicine & Ethics (2023)
• SCHOLARLY COMMONS
• Aziza Ahmed, Feminist Legal Theory and Praxis after Dobbs: Science, Politics, and Expertise 34 Yale Journal of Law and Feminism (2023)
• SCHOLARLY COMMONS
• Krawiec Bio

Transcript

SPEAKER_04: 0:00

So one of the things I was interested in as I was writing the book was how it has been the case that the story of AIDS has been told largely from the perspective of really brave, really important movements that were kind of run and led by gay men, white men primarily. And ACT UP is an amazing movement. It's been celebrated for its enormous achievements and They were smart activists. But because I was so interested in the question of women and HIV, it kept occurring to me that you watch How to Survive a Plague or Dallas Buyers Club or any movie that you're watching, any depiction. The historical work that's been done on AIDS tends to focus on that piece of the crisis, that there was a crisis amongst gay men. gay men were dying. And, you know, I just want to say that's really important work. But I did always notice that women were missing from that story.

SPEAKER_06: 0:59

Hey, hey, everybody. Welcome to the Taboo Trades podcast, a show about stuff we aren't supposed to sell, but do anyway. I'm your host, Kim Kravick. My guest today is Aziza Ahmed, a professor of law and N. Neal Pike scholar at the Boston University School of Law. She is also a co-director of BU Law's program on reproductive justice. She joins me and UVA Law 3L, Nia Saunders, to discuss her new book, Risk and Resistance. How Feminists Transformed the Law and Science of AIDS, forthcoming from Cambridge University Press in 2025. Prior to teaching, Professor Ahmed was a research associate at the Harvard School of Public Health program on international health and human rights. She came to that position after a women's law and public policy fellowship where she worked with the international community of women living with HIV AIDS. Professor Ahmed was a member of the technical advisory group on Good morning, Nia. Thanks for joining me. Thank you for having me. Why don't we start by having you

SPEAKER_05: 2:27

introduce yourself to our listeners? Yeah, sure. My name is Nia Saunders. I'm currently a 3L at UVA, and I'm excited to get started with this conversation.

SPEAKER_06: 2:38

Great. So you actually volunteered to be the host of this episode specifically. Why did you do that? What was it about the topic or the paper or the author that made you want to delve into this one a little bit more deeply?

SPEAKER_05: 2:52

Yeah, so I think that... Public health crises have always kind of shaped the way that a lot of women and people in general move through life. And when I've looked at the public health crises that have happened in America, you know, they involve a lot of isolation of certain groups. And last semester, I took feminist jurisprudence. And a lot of the conversation that we talked about was the way that women are oftentimes seen as capable of enduring more pain than the average person. I read about a potential intersection between feminism and the HIV epidemic. It's something that I never knew about. I never knew that women were excluded from the conversation. And I just thought that this was an important conversation, particularly now when we look at the way that women are treated as it relates to public health.

SPEAKER_06: 3:44

Yeah, I agree with you. I feel like this is a part of the story that at least I haven't seen told as much and that I think is really important. And as you say, there have been these misperceptions and sort of folklore about women's ability to withstand pain, or in this case, resist illness. And part of what she talks about in the book is the disproportionate impact on women of color. And as I'm sure you already know, Nia, there's quite a bit of research indicating misperceptions and folklore about the ability of Black people in particular to withstand pains. And so this really seems like an interesting intersection of all of our What do you hope to get out of the podcast today? I know you have some questions. Your classmates have some questions. What is it that you're really hoping to learn from her?

SPEAKER_05: 4:40

Yeah, you know, when I read things, particularly in law school, I think that it's really important to look at it through the lens of, you know, how can you use this today? because I think that past is precedent. And I think that today we're dealing with a lot of times where we can look at the way that the past has been handled and the way that certain groups have been isolated so that we don't continue to make the same mistakes. So I'm hoping that she specifically harps on the way that minorities were impacted, people of color, people within the LGBTQ community. I think that those are particular groups that I hope she touches on. And I hope that she has perspective that kind of looks forward. And I know a lot of the questions that we have for today kind of focused on how we can move forward in our process for, you know, making a more equitable world.

SPEAKER_06: 5:25

Yeah, it seems like an important question today. I mean, we obviously just had the COVID crisis, and I feel like I can't open social media without seeing something new about bird flu. And it's just, you know, we're not at the end of our various public health crises, and it would be good to not repeat the same mistakes from earlier health crises if possible. Okay, let's join the others. Aziza, thanks for joining us today. We're so happy to have you. Thank you. It's so nice to be here with all of you. Aziza, maybe you can start by giving us some background on this project, maybe what motivated it, whether you were responding to a particular line of scholars or research or events or anything like that.

SPEAKER_04: 6:16

Yeah, thank you for asking that. So I started thinking about this project when I was doing HIV-related work in activism. So I had actually long been involved in some sort of HIV activism from a women's health perspective. I was very interested in women's health issues and abortion politics, but I got drawn into AIDS activism when I was living and working in South Africa where the HIV rates were extremely high. And the year that I was there, Tablo and Becky declared that HIV didn't cause AIDS. And he was the president of South Africa at the time. And it was clear to me that the AIDS epidemic and the response to it was being driven in part by politics and cultural beliefs and political beliefs and political commitments. It wasn't just about a public health response, the sort of scientific response to public health crises as they emerge in the world. And of course, South Africa and the global South was situated differently in its ability to respond to the epidemic than countries in the global North. So I became very interested in what it meant to have a politics of public health, you know, in the context of being a young person living abroad in a world of people where one in four individuals was testing positive with HIV. And there was almost no appropriate public health infrastructure to deal with the crisis at hand. Um, and I stayed, I went to public health school after that. And I was, I stayed doing women's health advocacy that was in 2000. So this is now about 25 years ago. And, um, you know, I stayed doing women's health advocacy and I started getting more and more involved with women's rights groups who are doing work on HIV AIDS. And, you know, I was also very committed to thinking about abortion and women's health in the context of abortion. And I kept noticing that the two conversations were happening really distinctly from each other. And in one space, you know, it was really dominated by constitutional politics. And in another space, we were really talking about women, poor women around the world, many women of color who are trying to get HIV to register on the sort of national agendas and international agendas, especially the issue of women and HIV. And it was during that time, and by now it was after law school, and I had a fellowship with the International Community of Women Living with HIV and AIDS, but through the Georgetown Women's Law and Public Policy Program. And I started, you know, one of the things that AIDS Women... women's groups who are advocating in the AIDS space do is talk a lot about, well, these are the reasons why women are at risk. We're at risk because of violence against women. We're at risk because we're vulnerable in particular ways that have to do with our biology. And I got kind of interested in the question of, are these the right risk narratives that we're telling? Is this really what's happening here? Because sometimes I felt there was a little bit of a disconnect between what people were experiencing or how they contracted HIV. For example, in Eastern Europe, a lot of women are exposed to HIV through drug use. And so a harm reduction strategy would probably be more valuable than a strategy focused on only violence against women But again, these conversations were happening separately. Then one day, you know, after I became an academic, there was the World AIDS Conference in D.C. And I was there and I said, I wonder, you know, I really wanted to figure out, well, who was the first woman who was diagnosed with HIV in the world? And so I went to the Smithsonian Archive. I happened to be there and the Smithsonian Archive happened to be doing a big AIDS exhibit. I think partly maybe it was because the AIDS conference was happening in D.C. The AIDS conferences, global AIDS conferences are a huge deal. There's tens of thousands of people. You know, it's a huge thing. And I went down to the Smithsonian and I found this picture in Discovery Magazine. And it was a Discovery Magazine from 1986. And the cover of the magazine said, you know, we're here to tell you the facts about AIDS. And if you open it, the facts they're telling you about AIDS came with a picture. And there was a cross section of a penis, a cross section of a rectum and a cross section of a vagina. And the fact about AIDS that they were trying to tell people was that actually only gay men who are having anal sex were really at risk for HIV. Women were not at risk for HIV because women have rugged vaginas. And so that's what the picture was illustrating was the rugged vagina of the woman. And at the same time, I started to realize that that actually there was no first case of a woman being diagnosed with HIV. Actually, what was happening is that women were sort of being written out of the AIDS response And there was agitation by activist groups to say, hey, we think women are actually getting HIV. We think that you ought to be paying attention to this epidemic. And then I realized that actually it was a lot of lawyers who were involved in that fight because a lot of lawyers, poverty lawyers around that time were getting women who were being released from Bedford Women's Prison. And one lawyer in particular who I write about in the book, Terry McGovern, you know, she's in New York. She's getting these women who are coming out of Bedford Women's Prison. And they need social security benefits. They're disabled. They're getting sick. And she's saying, you know, the women say they have HIV or some of them were actually diagnosed with HIV, but they're not able to get the social security benefits. So here suddenly lawyers became really important. And I became interested in writing that story, which I had experienced after doing so many years of work in the AIDS world as sort of. not something that was registering in the minds of people sort of doing a public health response in social movement activism, that actually the story of how women came to be understood as having HIV is a story about activism. And it's a story about lawyers. And it's a story about people sort of rising up to demand recognition in the context of a public health crisis. So that's what I tried to do with the book, Bea, and the chapters that you all read are the chapters that are sort of the blow by blow. Like how did we get the CDC to change the definition of AIDS? And then the next chapter, which I don't think you all read, but it's about basically at the same time as women are starting to get diagnosed with HIV right around the early nineties, ART, antiretroviral therapy, which is the treatment for HIV, though it doesn't, obviously it doesn't cure HIV, but it treats the symptoms of HIV. And, was finally being rolled out by the early 90s. But the only way to get access to some of the early rollouts was through experimental trials that were being run by the National Institutes for Health. And women, due to a 1973 guidance, were systematically excluded from all clinical trials at the time. This also explains why if you are a person who goes to an obstetrician or gynecologist, you're going to experience many times in your life that they're going to say to you, we don't have any, we don't actually know how to solve this problem, or we don't actually understand anything about this particular type of cancer or this particular type of treatment or even pregnancy. We don't really have that much. We don't have that many answers. And that's because basically women have been systematically excluded from clinical trials since the 1970s. The AIDS crisis, however, meant that People were now dying because they weren't having any access to these drugs that were being rolled out in the context of clinical trials. So that chapter documents how the same AIDS activists, some joining with other strategy groups, basically pushed for... the inclusion of women in clinical trials, which really changed the entire landscape of clinical trials for women for many things, much beyond HIV and AIDS. But again, an under-told story, one that's not often recognized or understood, especially not the centrality of AIDS activists, feminist AIDS activists, and feminist ideas in changing these FDA rules and guidelines. The chapter following that really dives deep into a debate that happens between law and economics scholars like Richard Posner and Thomas Philipson. Law and economics scholars were extremely interested in the question of AIDS. They were bothered that what they saw was a crisis that was engendering a giant state bureaucratic response because they are, as a general sort of posture, critical of these giant state bureaucracy stepping into spaces. And they felt that it was potentially counterproductive. They were blogging about AIDS. They were thinking about AIDS. But this is a different type of conservatism because it was a more libertarian conservatism. I

SPEAKER_06: 14:57

remember Posner's piece on this, right, which was quite controversial at the time. My sense is it became more accepted over time. Is that correct? His idea about government

SPEAKER_04: 15:10

intervention?

SPEAKER_06: 15:11

Well, some of his ideas about inducing more safe behavior through various... incentives and programs?

SPEAKER_04: 15:20

No, I don't think he was proven right necessarily. I think that because there was a broader sort of scaling back of state efforts and a sort of neoliberalization, you could say, of the country, you know, and social welfare programs, his ideas were taken up as a sort of way to push forward an individual responsibility frame in the context of public health programs that you see echoed in the COVID response, for example, that it's kind of all up to you. At one point, the CDC director said during COVID, you know, like, you do you, basically, you know, your health is in your hands. That was her quote, you know, your health is in your hands. That's really a sort of individualized response to the pandemic. And I think that strand of the law and economics intervention did make its way into public health governance. But I don't think it's because it was proven right. I think it's because it sort of aligned itself with a broader set of political and social ideologies. Got it.

SPEAKER_06: 16:17

Okay. So I'm going to turn it over to Nia now. She's our co-host for today and she's going to run the show from here on out.

SPEAKER_05: 16:25

Good

SPEAKER_06: 16:25

morning.

SPEAKER_05: 16:26

Thank you so much for coming to speak with us. I think it's such a privilege to be able to host this podcast, especially about a topic that I think is so important. You just spoke about a lot of intersection and how that kind of fueled your drive to want to study this topic more. And I think that it would be useful to the listeners if we begin our conversation speaking about the intersection of race, gender and activism on the feminist movement within the fight against the HIV AIDS epidemic. And I will kick us off with my question, which specifically speaks to the race intersection. You know, in the paper that Black and Latino women were most impacted by the HIV epidemic and that many HIV advocacy groups that focused on the experiences specific to Black people were prevalent. How did the intersection of race and sexism limit or propel the feminist movement with respect to HIV?

SPEAKER_04: 17:16

Thank you. That's a great question. And it's definitely one of the themes I'm hoping that my book raises, you know, that people will engage with and talk about and think about. So one of the things I was interested in as I was writing the book was how it has been the case that the story of AIDS has been told largely from the perspective of really brave individuals. really important movements that were kind of run and led by gay men, white men primarily. And ACT UP, you know, is an amazing movement. It's been celebrated for its enormous achievements and you know, they were smart activists. But, you know, because I was so interested in the question of women in HIV, it was kept occurring to me that, you know, you watch How to Survive a Plague or, you know, Dallas Buyers Club or, you know, any movie that you're watching, any depiction, the historical work that's been done on AIDS tends to focus on that piece of the crisis, that there was a crisis amongst gay men, gay men were dying. And, you know, that's really important work. But I did always notice that women were missing from that story. Black women and Latino women were the most affected by HIV in the early period and still today. And part of the story I also wanted to tell was how women rose up, built community, began to fight a struggle that reflected their needs. One of the things that was very... profound to me is that AIDS really reveals how intertwined poverty is with public health crises, you know, and race, of course, is a big part of that story because so many of the poor women who are contracting HIV were Black and were Latina. That sat in contrast, actually, to many of the activist women who are in ACT UP formally, who were often white women, you know, and didn't always have HIV. And so there were some tensions between you know, thinking back on that moment. And it's hard for me to speak in really general terms because there's only one woman who I was able to talk to who is still alive from that period who is a Black Guyanese woman who now runs her own HIV AIDS organization and is a very inspirational person in and of herself. But many of the Black women in that period who were diagnosed with HIV died. And the people who are still alive who are HIV AIDS activists tend to be, who are women, tend to be the women who were HIV negative. And so the way the story gets told, who's been written out of the history of whose memories do we have to preserve and keep? All that is part of a bigger story that I'm trying to tell about how it was that one group, women of color in the context of this epidemic, were essentially erased from the heroic stories of AIDS, despite the fact that They were integral to having the CDC definition of AIDS shifted to include gynecological infections, despite the fact that they were driving a lot of the activism that happened. And so, you know, I think throughout the book, I try to touch on, but I don't do it in such a deep way because of the lack of data, but I try to touch on the fact that there were some tensions that are emerging between the different groups. Yeah. I think this continues today in a lot of ways. I think one of the ways we see it today and the way Black women have been and the concern about AIDS, which has been very high on the Black women's health agenda for a very long time, has been written out of the National Women's Health Conversation in many ways, which is entirely focused on abortion politics. And very few of the national organizations on abortion take on the issue of HIV AIDS as well. And, you know, anecdotally, I've spoken to women at different times who were parts of these activists, sort of national women's organizations, let's say in the 80s and 90s, and who said to me, you know, I actually stopped working there because I was so frustrated that the issues facing Black women beyond abortion were not appearing on the agendas and were not seen as sort of important and central to the women's health struggle. And so I'm trying to recover some of that past history and say, you Where should we have been paying more attention? Who should we be listening to at any given point in time? How should we be telling these stories about the past? And whose stories have been erased from these big social transformations that have occurred? There's also a thing with reproductive rights activism, which I'm very involved in, is that it's become very constitutionalized. And there's cases in the 1970s in which the court basically says in relation to challenges around abortion laws and government funding of abortion, indigeneity, like meaning your poverty is not the problem of the state. So the state doesn't have to actually fund an abortion. You know, we can fund pregnancy related services, but we're not compelled. Just because you have a right to something, the state doesn't have to like provide the money for that right to be sort of effectuated by an individual. And I think it's in that moment in the 1970s that there becomes a split in the reproductive rights movement where they sort of stop being focused on poor women and the connections between abortion and welfare in the sense of litigation and social movement strategy. And it becomes more constitutionalized and divorced from that prior anti-pro-choice agenda that was much more carefully attuned to the fact that We should be paying attention to how poverty operates in the space. Rhetorically, I think that remains true in the reproductive rights space. I think there's still a lot of awareness about the fact that the people who can't access abortion are poor women and Black women and Black poor women because of racial discrimination, because of where people live, because of how people live. But I'm not sure that it manifests in the actual strategies of the organizations.

SPEAKER_05: 23:26

Yeah, thank you. I think so much touches on the tensions that exist in a lot of movements, especially movements that seek to sort of remediate the injustices felt by minorities. When we look at the world today, I think there's a lot of division and there's a lot of ways that we can learn from the HIV epidemic and the way that it was handled. And Laura has a good question about this. So I'll move to you, Laura.

SPEAKER_03: 23:50

Yeah, thanks, Nia. And thank you, Aziza, for being here. So as we've mentioned here, and as you mentioned in your book, the feminist and activist groups working towards more acknowledgement for women and AIDS were so often divided, for example, over race, class, and even ideas about gender, such as the tension between the idea that there are real biological differences in women versus the idea that gender is just a social construct. So in today's divisive world. Are there any takeaways or lessons from the feminist movement over AIDS that might guide divided groups today as they come together to further desired social change?

SPEAKER_04: 24:28

Yeah. Well, I think that's a big question and it's sort of, thank you for that question. And it's sort of touching on two different tensions. One is, you know, how do we, how do we think about takeaways from this, the activism of this prior period? And the first is sort of, you know, What is the tension here that is inherent in this type of activism? And I think you're really touching on a deep thread. This is something that the medical sociologist Steve Epstein has written a lot about, which is this kind of contradiction that has existed in these movements for inclusion in scientific research and clinical trials and research. um, disease management, et cetera, for race and gender groups who are on in one stage saying things like, um, race is just a construct race is not an important feature of, you know, the, um, of, of how we, like, there's no bio, there's no biology to race essentially. And then in another context saying, actually you should include and make clinical trials more diverse because there's something different about how different racial groups might be experiencing a, um, a particular type of medical crisis. And I think Dorothy Roberts' work has been really instructive here in saying, actually, what we need to remember is that race is a stand-in for other socioeconomic factors. You know, race gets conflated with region. It gets conflated with class. It gets conflated. So you're asking, you might be asking the wrong questions about the kind of diversity and the way race is playing a role in those types of medical, the way we're seeing differential medical outcomes or, you know, whatever the scientific question is at the time. I

SPEAKER_06: 26:16

just want to give a shout out to Dorothy, who was on the podcast last year. She was actually our grand finale last season. Yeah. And so she discussed a lot of those issues when she was on the

SPEAKER_04: 26:27

podcast. Yeah. Her work on these questions is really transformational and it's made a huge impact in the world. And so, you know, there is this deep contradiction, I would say, that exists. I think as lawyers, there is a lesson to be learned from these moments, these contradictory positions, et cetera, which is that, you know, the activists in ACT UP, all of them, including the feminist activists, were extremely strategic. They were 100% committed and they were always flexible, I would say. You know, like there were times when you would understand like a particular dogma of about let's say the patriarchy of medicine to like rise to the top, but or a particular ideology, but they, they were, they were willing to sort of shift as needed in the context of a particular type of activism or a particular type of legal strategy. They, they were willing to be flexible. You know, they didn't, they didn't, You know, I think there could be a critique of this position too, but they didn't have the sense. I didn't get the idea that there was a sense that we ought to hang on to some specific idea of race or some specific idea of gender, even as the projects themselves were being animated by sort of anti-racist or, you know, you could say like trying to get, get racism out of the healthcare response or public health infrastructure, or in the context of gender, you know, get the patriarchy out of science, which is something that was very much, which was a prominent theme for feminists. And for many black women trying to like alert people to the intersectionality of what it meant to be a black woman who is actually contracting HIV and trying to navigate an unstable housing situation with having children, with having child custody issues, with having to deal with the fact that your death is impending and you're not able to get any treatment. And so, you know, it was about, I think there was a real commitment to both real structural and redistributional change and Coupled with the flexibility. And I think despite the fact that there were tensions and, you know, all movements have that. If you've ever been a part of a social movement, you know that tensions will emerge. And there was a lot of solidarity, you know, and like even for all the women's marches, for all the women's protests they had, for example, at the CDC, men showed up. You know, men from ACT UP came. Men from ACT UP participated in getting arrested. Men from ACT UP helped fund, create a bail fund for the women. So even where there was tension and even where, you know, sort of the feminists are saying, hey, you guys aren't really taking our issues on the way we'd want them to. There was support and solidarity at the core. And I think that's really what matters. I think also, even as there was potentially tension around race, let's say, People were committed to an anti-racist project. That seemed to manifest in my mind in reading the historical material and looking at the archives and stuff. It was very clear that people tried to hold on to all those threads, remain sort of solidaristic and remain flexible in how they perceived racism. you know, they ought to take their social movement activism forward.

SPEAKER_05: 29:45

Yeah, I think, and listen, what you're saying is there's a value to coalition building. And during the AIDS and HIV epidemic, there was this unity across racial and gender lines, notwithstanding the fact that a lot of women in our racial minorities were excluded. I think now would be a good time to turn to Anthony, who has a question specifically pertaining to that.

SPEAKER_00: 30:06

Yes. So, obviously, early feminists leveraged diversity and intersectionality as a strength, allowing them to expand their grassroots movements across racial, ethnic, and sexuality lines in support of women's issues, as you highlighted in the feminist response to the AIDS crisis. Today, however... The way intersectionality and identity politics are framed in practice seems to create tensions within large movements as different political ideologies, priorities, or perceptions of privilege and division can make it harder to organize collectively toward a common goal. How did early feminists build these broad and united coalitions? And I think more specifically, what lessons can we implement today so that kind of modern movements could rally around a common goal And like you said, show solidarity across these otherwise dividing lines towards, you know, big issues.

SPEAKER_04: 30:59

Yeah. You know, I think we've had unfortunately we've had so many instances of and opportunities to reflect on this question in these past few years. Yeah. I think for me, it's really about staying attuned to the needs of sort of the political economy questions and the poverty questions that drive different types of social movement activism and not letting your movement get disconnected from the related social movement groups that are out there doing the kind of work that might affect you. I think in the case of abortion politics, for example, Um, really, um, you know, something that's become important this past year to have been these ballot initiatives. And of course, in order to pay attention to ballot initiatives and of course, voting has become central to the question of abortion rights in the United States, because now we're going to see a deep, um, a deep setback in abortion rights. And we could see all sorts of federal laws being passed that ban abortion or grant fetal personhood, et cetera. You know, but the reproductive rights movement, you know, might, we might ask ourselves as a movement, like why, why weren't we more committed to the question of election law? Why weren't we more committed to the question of voting rights? Why haven't organizations been aligned on these racial justice questions that are going to now come back and haunt the reproductive rights groups that have become integral to reproductive rights organizing. Another thing is policing, for example. There's been a big conversation in social movement spaces about the rise of mass incarceration, about the rise of policing. Women have always been prosecuted in the context of their pregnancies. Again, as Dorothy Roberts' work shows and Michelle Goodwin and others, that there's been a whole series of prosecutions from the 1980s in the context of the supposed crack baby epidemic and prosecutions in the context of the opioid crisis. Those types of prosecutions were understood to sort of be happening in a small space and other, you know, like pregnancy justice and some smaller reproductive rights organizations were taking those issues on. But they didn't sort of always percolate up to sort of a national level agenda. Again, you know, there are issues largely facing in the early days. now poor women of all races, especially in the context of the opioid crisis, but, you know, especially Black women in the early days. And so issues like mass incarceration didn't really shape an agenda to rethink policing. It hasn't really shaped mainstream reproductive rights activism these past decades. few years. But of course, it's all going to come back now on all of these women who are providers who are going to be prosecuted, people who are going to be prosecuted in the context of aiding and abetting an abortion, you know, surveillance related to accessing abortion, data collection in the context of policing. All of these issues are kind of coming back to haunt the people seeking abortions who the repatriation movement is, you know, arguing for. So I think there's some soul searching that needs to happen. You know, like how did how How did these movements not see themselves as clearly linked? And I'm really talking about the sort of national conversation. I think at the local level, I think when you talk to activists in Mississippi or Alabama, for example, they are very connected. They do see these issues as deeply connected. So it's not that everyone does. And it's just that the people who were sort of saying, guys, these issues are connected, were shouting into the abyss, you know, and their voices are not being registered in the national conversations. This really also had a big part to play in the AIDS story because in the early days when Black women were frequently testing positive for HIV or contracting HIV, one of the issues that became clear is that it was the circulation in and out of prison of their male partners that were contributing to the rise of numbers of HIV for Black women. And that didn't appear anywhere. So, like, you don't have any national women's rights organization saying, oh, we should focus on mass incarceration because actually that's what's contributing to this crisis in Black women. Or maybe we should think about prisons because, you know, Bedford Women's Prison, it turns out to be like a spot where women are being released from the prison where they're, you know, they find themselves in prison where they're not going to get the care that they need. None of those issues have really percolated up. So I think we're percolating up to the national agendas or sort of the mainstream conversations that feminists were having. And so, you know, I think, again, it's a moment to reflect on that past and ask ourselves, how did these... movements become so disconnected from one another um there's probably other stories you could tell in the in our current moment about funding structures and foundations and who funds what and what they're interested in funding and you know like maybe it's a political economy of foundation funding and grant making that's driving these agendas as much as what organizations want to do but i think it's worth thinking about

SPEAKER_05: 36:01

yeah so um I think that now that we spoke about coalition building and we talked about the benefits that unity has had on the HIV AIDS epidemic and moving it forward, I thought it would be useful for our listeners if we sort of focused on the way that public health crises can sort of create public disorder or unrest for a specific group. Specifically, I had the question, to what extent do we use public health crises to create public isolation and condemnation of a particular group? For example, in the case of HIV and the COVID outbreak, each were dominated by rhetoric that characterized those infected by the disease as especially othered. In the case of HIV, it was gay men, drug users, and poor women of color. And in the case of COVID, it was the views that those who contracted it were careless or unwilling to stay home. When some simply lived in crowded or multi-generational households or worked at jobs that brought them in contact with others and did not have the luxury of work-from-home policies.

SPEAKER_04: 36:57

Yeah, thank you so much, Nia, for that question. And I have written a bit about drawing on some of my work for this book. I have co-authored a few pieces with Jason Jackson on these very specific questions and how they've impacted COVID, just to sort of say that this is something I've been thinking about. Yeah, I think one of the things the AIDS crisis is known for, in retrospect, is the way that it stigmatized especially gay men and ignored them. many people who were injecting drugs at the time or who were drug users at the time who were vulnerable and also sex workers too were ignored in that early part of the crisis and there's a lot to say about sex work and I have a lot about sex work in my book but I think it's interesting because one of the things the HIV story really tells us is that it shows us is how on one hand the state is having this like punitive discriminatory sort of response to one group while it's totally ignoring another group which is in this case women in the case I'm writing about and so while one group is trying to say like can you give us a can you give us any response that you know gay men are saying like can you please dedicate funding to HIV AIDS like even though the response that they're getting is punitive they're like struggling to say like we need a decent good robust public health response women are sort of saying like can you recognize us in the context of this crisis you know can you recognize us as people who are vulnerable. So, you know, people are sort of relating to the state in lots of different complicated ways because they want a public health response. They want funding to be dedicated to their communities, even as the state is taking this highly punitive approach to addressing the epidemic. That is also, of about the time that all this is taking place. You know, it's the Reagan administration, the early AIDS crisis is really at the time when we're in the midst of a war on drugs, harm reduction, which is the idea that you go out into the streets and give clean needles or you give people condoms or you talk about sex, you know, is not really the favorite approach by politicians, even though it's very much the favorite approach by public health, sort of public health bureaucrats and public health agencies and public health organizations are sort of advocating for harm reduction approach while the state is taking this really punitive approach to the AIDS crisis. And of course, that dichotomy lives with us still today you know when we say oh why did they send the police for a mental health check and then shoot someone you know in the process of that mental health check it's that same contradiction like you need the state to be involved you know you need to call on the state sometimes for help but you know what we have built up is a state that basically responds in these punitive ways so there's this tension that's kind of existing and how people are relating to the state in the context of a crisis with you know a sort of division between people who want a robust good state public health response and the state, which is offering a sort of more punitive response. And, you know, of course, you know, the dynamics were different during COVID, but similar in COVID, we see that that sort of individualistic response that stays with us, you know, with a broader perspective that sort of imbues all of our programming in the United States, that we all ought to be taking care of ourselves, you know, that this is about individual responsibility, sort of drives the the response to the public health crisis. Like I mentioned, you know, the head of the CDC is saying, well, your health is in your hands. This leaves, of course, and this totally ignores, it totally elides the structural forces that are making some people much more vulnerable to contracting COVID than other people, people who can't actually exercise individual choice to protect themselves against contracting COVID. So either, as you mentioned, because of the type of housing conditions you're in, you can't actually separate and have your own bathroom. The CDC guidelines almost presuppose an upper middle class family to say like, oh, you should isolate at home means you have to have many bedrooms and an extra bathroom. And, you know, you're not putting anyone else out. You're sort of separate from everybody else, which suggests that your house is big enough to accommodate that, which is why New York City, you know, had so many cases of intra home transmission. But also, as you said, essential workers who had to work to earn money to survive the pandemic. And there was a way in which the entire response to the pandemic basically ignored the needs of those essential workers and sort of left a lot of people, people in meatpacking factories, people who are working at Instacart, people who are grocery shopping for others at risk of contracting COVID. And as you guys probably remember, we didn't have any PPE. And you might have been asking yourself, well, how do we get in? Like, how is it possible that such a rich country like America does not have the appropriate infrastructure to For a public health response. Well, I mean, some of that story is told during the AIDS crisis, you know, that actually that was a moment, too, where we said to people, you know, this is on you. You know, like you need to we're not going to provide you any resources. We're not going to provide you any support. But you have to take care of yourself in the context of this epidemic. And it was leaning into a sort of personal responsibility frame, ignoring the structural factors that exist. force people into positions where they are exposed to HIV, an anti-harm reduction sort of perspective that sort of manifested today in the COVID crisis and created many of the, laid the foundation for many of the dynamics that you mentioned, like seeing that some groups of people were being virtually ignored while other groups of people are able to sort of follow these CDC guidelines of staying at home and working from home and being on your laptop and emerge out of the COVID crisis in some ways fitter and better and healthier because they got to stay home for a long time than people who were... I don't want to overstate that because, of course, there were so many crises that came from the isolation and mental health struggles and children, et cetera. But, you know, you had a world of people who could protect themselves in the sort of most formal ways that the CDC was prescribing and a group of people who couldn't. And we didn't, we didn't really, you know, we didn't really respond to the needs of that community of people who were poor, who are largely people of color, who are lots of immigrant workers, you know, and we weren't able, we didn't provide the services that We needed to provide for those communities. We just ignored all the structural drivers and also ignored the possibility of a structural response.

SPEAKER_06: 43:34

Aziza, your book is in some ways about the lessons maybe that we didn't learn from the HIV crisis. And I guess my question is, my sense is that we are not learning the lessons that we should have learned from the COVID crisis either. But you would know more about that than I would. What is your sense?

SPEAKER_04: 43:55

Yeah, I think, you know, I really thought when COVID happened that we were going to learn an important lesson that we didn't learn during the AIDS crisis. And I thought part of what would motivate people to actually stop and imagine a different world this time was that so many more people were affected by COVID. It wasn't isolated to groups that were being marginalized and stigmatized, that actually we were also affected, that maybe it would say it would make us all feel that actually we should have a robust ability to respond to crises, that the state should be able to take actions to essentially alleviate poverty, decrease people's risk. It's been really disturbing that, you know, actually the people who came out on top are the folks who took an extreme libertarian stance approach to the pandemic, you know, all the people who are being appointed now to the various administrations like RFK and Jay Bhattacharya, I think is his name, you know, they really pushed a sort of agenda that would minimize the state, would minimize state involvement, would let people die through herd immunity, you know, through through sort of essentially letting the virus run rampant through communities as opposed to saying, oh, should we stop the virus? And of course, that's the Great Barrington Declaration that was signed by scientists who are largely discredited. That was criticized in the public health community. And now they're all going to lead the federal agency. So it really feels in a profound way that we didn't learn anything. And I've I felt for a minute that I was at the start of the COVID pandemic because of all the work I had done on AIDS. I was actually quite good, um, at predicting what was going to happen next. You know, I was, I had sort of, uh, we would have all these conversations at home or with my family. I mean, everyone was having all these conversations and more with other public health people. And, you know, like, you know, the political economy of public health inside out, you know, what's going to be prioritized. You have, you understand that actually, um, there's going to be all these critiques of vaccines or that we're going to be home for a certain period of time or the state's going to try to take control and the state's going to try to assert authority in particular ways that maybe aren't actually helpful. So you know what's coming, you see all that coming. But I think I just held on to a naive belief that maybe it was going to teach us all a big lesson, that we actually do need to imagine ourselves as all connected to each other because it turns out we are breathing the same air and giving each other viruses all the time. And that should maybe point us in the direction of Having a more, a response or a state apparatus that helps us all, like lifts us all up in the context of the fact that we're breathing the same air, you know, but literally, and, but we did, we really didn't learn. those lessons. And we really did seem to just reinforce the idea that we're happy to throw people under the bus. We're happy to leave migrant workers without protections. We're happy to have other people do our grocery shopping if we can stay safe at home. That individualism really has taken over in a way that's really going to hurt people who are poor and hurt people of color. If it's helpful, I can give you an example. One of the things that was very political in the beginning of the pandemic because of the Trump administration was whether or not COVID remained in the air after someone with COVID was in the room. And so if we believe that it does, then you should get air purifiers for your house. Over time, everyone bought into that idea and air purifiers became a thing. Like we should be air purifying schools. We should be air purifying our offices. We should be air purifying in our home. If you have a bunch of essential workers who are grocery shopping, who are at high risk of contracting a virus, an airborne virus, who are going to go home and expose their family, what's the easiest thing you could do for those individuals is give them air purifiers for their house. Nobody gave out any free air purifiers. Uber and Instacart should have had to buy their employees air purifiers. They made so much money during the context of the pandemic. Now, I'm not saying it's easy to force a company to buy air purifiers for their staff, but there should have been a way that public health interventions were targeting and making it possible for those Instacart workers and Uber drivers and Amazon Prime grocery shoppers to live their life in a way that was safe, to not take COVID back to their families or the communities of people that they were living with. But there was no effort and there was nothing. There was a minute where some cities set up hotels where if you had COVID, you could go stay in the hotel for a few days. Those hotels filled up immediately. The programs ran out of money. They didn't continue. But Those were meant to be a way to alleviate sort of the risk of transmission in homes that were crowded already. But we didn't pick them up. You know, they weren't widely spread. They were just isolated cities, ran programs where, you know, people could isolate basically in a hotel if you couldn't isolate at home. There are so many opportunities to make good interventions. And we felt we totally failed to do so. And now with this new administration, we've actually gone in that like total opposite direction. Right.

SPEAKER_05: 49:40

Thank you. Yeah, I think there's a value to being overt about the things that you demand from public health agencies, from the government, et cetera. And one thing that's been useful in history has been protests. And that has helped shape a lot of change within the United States. So I think that's a good time for us to pivot our focus to a timely question from John Henry that highlights the role of protests alongside advocacy in the fight against HIV. I'm sure our listeners will find this discussion especially relevant given today's climate on social activism and demands for systemic change.

SPEAKER_02: 50:13

Yeah, thank you, Nia. So hi, Ziza. So in your book, you focus on the role that litigation and advocacy played in shifting scientific consensus. on HIV. In particular, protests take center stage in your analysis, as you describe how activists planned numerous demonstrations to escalate confrontations with the CDC and the Social Security Administration. And these protests seem to supplement meetings with government officials and litigation as well. When lawyers, policymakers, and law professors discuss advocacy in the legal community, protest is often downplayed in comparison to more institutional forms of advocacy. It's framed as extreme, an effectual and not an exercise of legal acumen. Yet it seems like protesting was a driving force of the movement and the legal work behind it. What does your analysis say about the importance of protesting and demonstrating as a form of advocacy that can supplement litigation and participation in policymaking process? Should lawyers, particularly those in public interest and movement spaces, do more to embrace protesting as an instrument for change?

SPEAKER_04: 51:17

Yeah, thank you so much for that question, John. I would say that integral to the success of the HIV AIDS movement were the protests. And It's one of the things ACT UP was most known for is the types of protests they would stage and the way that they put their bodies on the line to demand a better response from the state, from the National Institutes of Health, from the Food and Drug Administration. And of course, for them, it was a life and death issue because many of them were dying of HIV. And so I think that people were fueled by the fact that this was what they had to do to try to survive. And There was a politics of survival, you know, that this is what we must do. I think absolutely it's important. And like, you know, Neo referred to, you know, like some of the most successful social movements in the United States have coupled their legal work and legal reform changes with social movement activism. This is true about feminists. This is true about civil rights. This is true about feminist struggles, I should say. It's true about civil rights. It's true about abortion politics. And it's because, you know, it's an opportunity, as you said, to both make a sort of institutional shift and use of formal rules that exist to try to bring about some transformation while also recognizing, I think, and that politics matters a lot. It matters a lot in legal reform. It matters a lot in litigation. And it's a reminder to the bureaucrats that people are invested in this issue. When I interviewed people at the CDC conference, they did say that the protests mattered for how they understood themselves as in relationship to the communities that they were working for. And sometimes they said that, you know, one person I spoke to said that it turned their head towards, you know, the issue of women much quicker than they might have otherwise gotten to it because they're outside their offices or, you know, in their mailboxes are hundreds of letters and petitions and, you know, activists who are basically saying, saying, you know, like, you are not listening to me. I'm telling you I'm dying, you know. And there were some really, ACT UP used to document a lot of their meetings. So there's transcriptions of some of their meetings with Anthony Fauci and other people who was at that time also the director of the National Institutes for Allergy and Infectious Disease, which he stayed on through COVID and has recently retired. And Anthony Fauci himself has spoken about how activists and activism made, you know, sort of transformed his own thinking and approach to how he would deal with the crisis and being more inclusive of community perspectives, et cetera. But there's one meeting that is transcribed where Katrina Haslip, who's a woman who was released from Bedford Women's Prison and becomes very important in this struggle. The meeting's coming to an end. It's a meeting between Anthony Fauci and women's health advocates, women from ACT UP, and Katrina Haslip, who is both ACT UP and in another organization called Life Force, which was based in Brooklyn, and a couple other administrators. And at the end of the meeting, she says to them, I want you to know that when I die, it's going to be your fault. And that's how the meeting seemed to have ended. And there's something extremely profound about that. I felt very moved when I read that, that You know, she said to the bureaucrats who are being slow to respond, you know, when I die, you bear the burden of this. And that is going to make a difference, you know, to someone. If they're, you know, a good human, you know, you're going to pause. And she did die, you know, and she died really young. And her death, as I mentioned in the chapters, they're not... it wasn't recorded as an AIDS death, you know, because the struggle she was a part of didn't like get formalized in law until after she died. And I, you know, I think it's, I think that it's going to take, you know, it continues to take that level of sort of commitment and sort of confrontation to a certain degree to help people understand what is going on and what's happening. And I, you know, there's been, there's been since before COVID and, you know, until today, so many social movements that are protesting and it does keep the issue on the national agenda, you know, for better or worse sometimes, but, you know, it does keep the issue alive. And so, you know, in the AIDS crisis, that's what these women wanted was that no one forget that HIV was impacting women.

SPEAKER_02: 56:00

Thank you.

SPEAKER_05: 56:02

Yeah, so we only have a few more minutes, and I thought that it would be useful if we sort of harp on the legal advocacy that's involved in a lot of these movements. I think that as future attorneys, and hopefully there's a lot of listeners that are also deeply interested in political and legal movements. So with that being said, to close us out, we will turn to Tanner's question about the intersection of legal advocacy and scientific understanding.

SPEAKER_01: 56:28

Hi, thanks so much for being here today. In your paper, you discuss how the feminist movement played a significant role in shifting the CDC's definition of AIDS to better address the needs of women with HIV and AIDS. And given this relationship between legal advocacy and scientific understanding, I'm curious what potential risks you see in the ability of legal and political forces to influence these medical definitions and other pressing areas of science. In your chapters, you tell the story of how advocacy brought an end to an erroneous scientific view but on the other hand what safeguards are there to ensure that an incorrect or biased view is not imposed and also if these safeguards do exist do they act as barriers to changes that we do seek or need

SPEAKER_04: 57:15

yeah you know um When I first started working on this book and I was saying to people, I'm really interested, and this is before COVID, I would say to people, I'm really interested in writing a book about the CDC and AIDS politics of the CDC and how the CDC is a political agency. And it was really discouraging because people would say stuff to me like, the CDC is not a political agency. No one cares about the CDC. It's not interesting. It's so bureaucratic. Politics hasn't infused the agency in the same way that other agencies have been sort of infused with politics. And, um, then COVID happened and everyone was like, oh, uh, you know, who's been thinking about the fact that CDC is sometimes, you know, actually responsive to politics. Um, and I experienced this total, like I would say to people, I'm writing a book about the politics of the season. Oh, that's a timely topic. You know, all everyone's talking about is the CDC being a political agency. Um, And then it turned into what your book is about criticizing or sort of thinking about the openness of the CDC to politics. This is kind of dangerous because, you know, actually we what we need to do right now is hold on for our life to the idea of expertise and good expertise and good knowledge, production and science. And of course, it wasn't just a conversation I was having in academic spaces. Everyone hung signs outside their house that said, you know, science is real. Human rights are, you know. Like, all of that was an indication that, you know, like, well, we have the science on our side. And, you know, the progressives own, like, what good science is. And I think I'm trying to do something with this project that sort of disrupts the idea that there is an apolitical way to think about science. about science and questions of science. I mean, even if we want to believe that scientific discovery is happening in a lab removed from everything else that's going on, once it enters the political arena, once it enters the administrative agencies, it's going to become part of a broader set of political questions. It's going to become something that's deployed in a strategic way to achieve particular ends. And then I think what I'm trying to emphasize is, well, what ends are we trying to get to? Is it the end of the administrative state or is it making sure that poor people can survive the next pandemic? And to me, where we land on that question is an important part of how I understand the struggle to disrupt the idea that science is objective. I think ironically with what's going on with the appointments now, this people will be once again willing to understand that actually it's progressives that have to see that this agency that is otherwise treated as an agency that acts on sort of a neutral, scientific, bureaucratic type of politics has to be open to some agitation and some challenge because otherwise we're going to end up with public health agencies all pushing, as Project 2025 suggests, for example, anti-choice politics, and everyone will be aligned on that. And we have to be able to understand as a social movement or as people who care about being able to access a full range of health procedures and being able to respond effectively to epidemics, that actually these agencies are political agencies and we have to be agile enough to say, okay, well, now that I'm in this posture, I can understand that that agency has to be challenged for what they're doing, that they can't just hold themselves out as an objective, as an agency that's sort of untouched by politics that only acts in the vision of good, pure science. So I hope I'm making sense, but I think that's part of what I'm saying about the flexibility of ACT UP, about the flexibility of our current political environment, that it requires us to take positions that we are historically uncomfortable with because as—I mean, I'm assuming that you guys are—I'm sorry if I'm assuming you're politics, but— Let me say, as a progressive, I like to believe that science is on my side, that science is always proving the right thing, that vaccinations work. But that is not the moment we're going to be in now. We're going to have an administration with a cloak of science and administrative agencies that have been historically granted, sort of been deferred to. We're going to have a lot of problematic things happen. And so we need to understand that we have to take a critical posture towards that. agencies and the science that they're going to be sort of trying to deploy in service of their political goals. So, you know, that's what I'm trying to get at in the book. And I guess we'll have to see how some of this plays out now with our current political moment.

SPEAKER_06: 1:01:53

Thank you so much for doing this, Aziza. Yeah, no worries. Thank you so much for having me. Thanks, Aziza. Bye-bye.